There are times that appear where life is so full of things happening, emotions being strained and life not giving you a second to think or breath, these last couple of weeks have felt just like that. I am not holding my breath but I hope it is over, for a while at least. I have this great urge to just have a time where I can gather back my strength and where there are no tears or times where my brain throws a tantrum and refused to connect with what is happening. At the second there is only on hurdle that I can see and that is I have now received the new form from the Job Centre Plus asking me to prove that I am unable to work. At this second I don’t foresee a problem but I have heard so many horror stories on TV that I have a degree of apprehension. So far I haven’t started to fill it in, but I have read it through and I can see that much of it is cleverly worded to trip some people up with ease, but all I can do is fill it in honestly and ask my doctor to supply a letter confirming that not only do I still have all the preciously listed conditions, they are worse and now joined by new ones. Adam says I am worrying about nothing and I believe that anyone can now see that I couldn’t work, but you just never know how the person who reads my answer feels on that day or how they interrupt my words. I am going to start filling it in today and I will speak to my GP on Monday to see if he is happy to update his last letter. I really don’t have much else to send to them as hospitals now only write to your GP without sending out a copy to the patient, so I don’t have a growing file as I had in the past.
Yesterday I tried actually having a shorter time in bed in the afternoon, as on both Tuesday or Thursday I didn’t manage to sleep before the family arrived, my mind was racing and sleep remained untouchable, to my surprise I had managed not to badly to stay awake with out 2 or 3 hrs sleep. It set me wondering if I was in a strange way making myself more tired by sleep than I was by staying awake, back to front but I felt it was worth a shot. It sort of worked as it had during the week, I manage not to badly up to around 8:30 and then crashed of the side of the world. It gave me a longer afternoon but did nothing for my evening, but the real down side is in the mornings, I find it really difficult to wake up and to get on with things, there is this great desire to ignore the alarm clock that I am suddenly finding difficult to even find, off. Once I am out of bed it is taking around an hour to find my stride, not a really helpful action in any way. It seems to be always the same, nothing is perfect and I have a choice of which I prefer out of two not so great choices. I suppose I just have to do as I always have take it as it is on the day, but my tests were because I know this week is going to be unbearably hot again, any help, no matter how small is welcome at those times.
Since I had my diagnosis I had been thinking about a blood oxygen meter that you clip on to your finger, it has turned into one of those hunts into nowhere. There are hundreds on the market with priced from £20 to £200 and all the recommendations are pointing at the cheap ones as a waste of money as they just don’t measure well enough, if at all. It isn’t something I need to buy but I thought it might give me some peace of mind, but then the costs appeared, enough to stop anyone breathing on there own. I expect if the consultant thought I needed one, one would have been supplied, may be I am jumping in to the future, especially as I do actually believe it is nothing but peace of mind rather than essential to life. I have only been on the meds they supplied for around 2 weeks now but I actually do feel a difference, along with the physio I do seem to be breathing with a little more ease. Lying down still leaves me with lungs like lead and pain in my chest that restricts how deep my breaths are, but even then I am managing better.
It feels and is probably the truth, that lately I have been writing about almost anything other than my MS, I have to report it hasn’t gone away, it just dropped in it’s importance for a short period of time. The strange thing is it is having an equal impact on my breathing as the Emphysema, yet I ignore that fact with ease. It also hasn’t stopped causing me pain all the time or any of the other things that filled my blog for months. So for a moment, I’m going to put my breathing issues out of the picture, and once again concentrate on everything else, suddenly there are two area’s that are clearly the worst. No prizes for guessing one is my legs, there has been no change there that I can see, just constant pain and constant searching for just that bit of comfort. With all our visitors I have been pushing myself to walk that bit more, just helping to fetch glasses of wine and so on, but each night I paid for it. There is this strange need to appear better than I really am, when you are faced with people looking at you as thought you might die any second. Add on to that that I have also been pushing it big style to keep my brain appearing able to get on with a conversation, a game that worked better at some points than others.
The second problem I seem to have again is with my bladder. I haven’t been using my catheters as well I haven’t felt I have needed to, but in the last couple of months I have been taking longer and longer to empty my bladder, well I can’t even be sure if it is empty. Just dribbles and stops and again, over and over while the minutes pass. I know that I have to go back to them but like many things I just keep hoping it will settle and go back to a more normal pattern. I also know that just going 2 to 3 times a day is not enough, but with everything else well I have just left things without intervention. Once again here is an issue with something controlled by my Vagus nerve, adding to my growing belief that that is what my MS is playing with big style. I know this problem is in my control and ignoring it actually only makes things worse, so once again I have to go through them embarrassment of using them. That may make no sense to many as well how can it be embracing, no one else is in the loo with me, but it is as I have to take even longer in there and then I have to dispose of the used catheter. Carrying them as discreetly as possible and hoping he isn’t in the kitchen, then slipping them into the bin being sure they are not in sight when the bin is opened. Adam knows fully that I use them, as well he has to collect them from the Chemist, another huge embarrassment, but yet another point that makes me feel terrible. Put all of it together and it grows into this huge embarrassment that I simply don’t need, but like everything else, well I am going to have to bite the bullet and get on with it.
Right now I am hoping that the week ahead is simple without any trauma and one that I can get rest and time to recover, even if it is only very sightly. Yes I have a few things to do, but high on the list is rest.